Want to know how ‘Chronic Fatigue’ feels?

How best to describe what chronic fatigue feels like? Perhaps the most effective way would be to compare it to some more relatable ‘everyday’ scenarios.

So here goes:

Imagine you’re midway through an atrocious bout of flu. No, not the sneeze and sniffle sort that men call flu, I’m talking the full works: body aches, pounding head, cold sweats, chills, and the raging fever sort.

Now, with your energy levels already running on 50%, you head to the airport and embark upon an epic 24-hour flight. The seat isn’t big enough to swing a hamster in and the food is inedible at best. An irritating child kicks you in the small of your back for hours on end; your body now feels even more bruised, battered and achy than before.

Sitting in the dark and surrounded by 100’s of snoring strangers, you feel isolated and totally alone. You give up trying to sleep and watch film after film to pass the time, but this makes your eyeballs sore and sandpaper dry. You’re desperately thirsty, but as you’re pinned in by the window you can’t risk a full bladder. Five films and two rock-hard bread rolls in, you realise just how far you still have to travel and you begin to feel a bit beside yourself.

By the time you arrive at your destination you look, feel and smell like death. As you exit the plane, you’re hit in the face by a 50-degree heat and a 90-degree humidity. You’re feeling weak, disoriented and so dizzy from exhaustion you can hardly stand. Your brain is completed shrouded in fog and you can barely remember your own name.

By now you’re running on 30%, tops.

Fast forward to that night and your body is moving in slow motion. Your use of speech is limited to grunts and your concentration levels are shot to shit. You’re convinced you’re battling the worst diagnosed case of jet lag ever. But still, it’s holiday time, so you decide to hit the town. Copious amounts of alcohol and some rather suspect street food later, you collapse into bed.

The next morning, before you even struggle to prise open your eyelids, you realise something has gone terribly wrong with your body. Panic starts to set in and you feel scared and vulnerable.

Your battered limbs feel as if they’ve been encased in cement and bolted to the bed. Raising your head from the pillow is a step too far. It’s as much as you can do to twitch one finger. You soon come to the conclusion you’re suffering from the worst diagnosed hangover ever.

Despite having slept all night, you’re now running on 20%.

Eventually, your body starts responding to basic requests and you heave yourself into a sitting position; it takes another good few minutes of concentration before you can stand. You decide it’s probably safer to sit down on the floor while taking a shower. Hot water helps with the aching bones, but washing your hair is out of the question, as your arms aren’t strong enough to lift above waist height. Ditto for teeth, so you resort to resting your elbows on the sink while you brush.

By the time you’re clean, you’re running on 10%, max.

Heading out for a day of sightseeing, you attempt to climb (what appears to be) the steepest hill you’ve ever seen. Everyone else seems to be overtaking you at speed, but putting one foot in front of the other is proving something of a challenge. It feels as if you’re wading through treacle; every step takes concentration and requires way more energy than you have. You hit the wall.

By the time you go to bed that night, every limb is on fire and you’re so knackered you can neither think nor speak. Another shower is certainly out of the question. Nausea is coming in waves and you think you might be sick. You pray it’s not that dodgy street food from the night before.

Climbing into bed you expect to fall into a deep and wonderful sleep – but you don’t. Despite being delirious with exhaustion you lay awake for hours on end. You need the loo at least 6 times and each time it’s a mission to get out of bed. It’s now something stupid o’clock in the morning and you’re wondering how it’s even possible to experience extreme fatigue and insomnia at exactly the same time.

At most, you’re now scrapping the barrel on 5%.

The next morning you wake up, peel open your eyelids and realise you still feel exactly the same as you did the night before. The thought of facing another day like yesterday is just too much. You could cry.

A full night’s sleep and you’re only back up to a measly 10%.

That day, you lay on the bed and do absolutely nothing. You can’t bring yourself to read, watch TV or even talk. By night-time you’re back down to 5%. You don’t sleep well and the next day you wake up feeling exactly the same sodding way. And so it goes on.

Occasionally, after prolonged periods of rest your body charges back up to 50% – you feel pretty bloody fantastic. But then you go and ruin it all by trying to do too much. A slap on the hand for being overly ambitious and back down to 5% you go.

Weeks pass. Months pass. Years pass. You’re forced to accept that this is now the new ‘normal’.

You hate your illness. You hate your body. You hate what you can no longer do. Your doctors tell you there is no cure for chronic fatigue, just ‘rest’.

You could cry. You often do.

P.S. The description above may sound highly unrealistic and incredibly melodramatic, but take away the unlikely chain of events, and the rest (in my experience) is the bloody depressing reality of living with chronic fatigue.

I thought that I had invented the conceptual description of wading through treacle… Was surprised and sadly comforted to find a kindred spirit. No mention of the blinding light that buzzes and crackles while normal folk appear relaxed and soothed. And no mention of the screeching noise that stabs with jagged blades while others appear unaffected. And no mention of the audio dyslexia… So fatigued that common language sounds foreign and incomprehensible. And people look at your reddened eyes with suspicion… As with your questionable gait. Drug addict, alcoholic, weirdo. So you go out less and less as faking it becomes harder and harder. Untill you fit the bill of a lazy, good for nothing social burden and drain on society. There are TV programs about people like you. There are laws to catch you out. You’re a criminal and its just a matter of time until you, and everyone like you is caught. And that’s not to mention the host of doctors who disbelieve, dont offer treatment or assessment for progression of your illness. They fill you full of anti-depressants and spend the rest of their time rolling their eyes.

Entirely sums it up.. It’s dreadful that thousands of us go through this every day for years on end, productive lives lost and no real interest in our wellbeing or recovery aside from a few wonderful committed individuals.

I have been fighting for my life for the last 20 years…. what hurts the most to me is that I never feel well enough to visit my two daughters or even friends. All alone and don’t know how much longer I can go on. Forgive me I cannot concentrate to write anymore. God bless you. Allen

Blogroll

Disclaimer:

Please be advised the author of this blog has no medical training. If you have any questions regarding SLE, including but not limited to diagnosis, treatment, and living with the disease, you should please contact a medical professional.